Finding a Specialist

If you are diagnosed with pulmonary hypertension (PH) or your doctor suspects PH, it is important for you to see a specialist.
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Pulmonary arterial hypertension (PAH) is a rare, progressive lung disease caused when the tiny arteries in your lungs become narrowed and thickened. Hear how a specialist will help you get the best possible care.

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 If you have been diagnosed with pulmonary hypertension, or your doctor suspects pulmonary arterial hypertension (also called PH), finding a specialist is critical to managing your disease.

Start by discussing your options with your primary healthcare provider. You can ask your provider who they recommend, how a specialist can help, what kind of care or tests you might need, and what to expect during your first visit. Your doctor can send your medical records before your first visit.

Bring a list of questions and, if you can, a trusted friend or family member with you. When a patient is referred to me, I review their medical history and past tests. I may order additional tests or request a repeat test for accuracy.

Different treatment options exist for various types of pulmonary hypertension, so an accurate diagnosis is essential. Working with a specialist means you're seeing someone who has experience treating patients with the disease.

I was diagnosed with PH at 23. After being diagnosed, finding the right specialist significantly improved my life. Before finding my specialists, my symptoms were poorly controlled. Now I have a customized treatment plan that’s just right for me. The care I receive allows me to feel well enough to do the things I enjoy and live a good life with my daughters.

PH has no cure, but treatment options are constantly updated to slow progression and help manage symptoms. When seen by a specialist, you'll receive the latest treatment and resources to help you live your best life.

Why Do You Need a Specialist?

  • Pulmonary hypertension is a rare disease. Your primary care provider is less likely to have experience treating someone with a rare disease.
  • There are different types of PH. It is important for you to know exactly what type of PH you have so that you get the treatment that is right for you.
  • When you are treated by a specialist you will have access to the latest treatment options based on guidelines specialists closely follow.

What Can a Specialist Do for You?

  • Review your medical records and the past medical tests you have had.
  • Order additional tests if needed to confirm your diagnosis and help plan your course of treatment.
  • Provide you with a treatment plan that is tailored to meet your individual needs.
  • Slow disease progression by closely monitoring your symptoms and adjusting your treatment plan as needed. 
  • Provide support options to help you best manage your disease.
  • Share information on clinical trials that may be right for you.

How Do You Find a Specialist?

Call the Lung HelpLine, 1-800-LUNGUSA, if you have questions about finding a specialist.

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Preparing for Your First Visit to the Specialist

You may feel overwhelmed going to a specialist for the first time; however, preparing for your visit can help you learn how to best manage your disease. You can get the most from your appointment by taking these steps.

  • Share important information with your specialist including your medical and family history
  • Write down the questions you want answers to so you don’t forget or can simply hand the list to the specialist.
  • Consider bringing a trusted family member or friend with you to the appointment. 
  • Advocate for yourself or ask the support person you brought with you to help ensure that your needs are being met and that your specialist understands your expectations. 

Page last updated: June 11, 2025

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